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The Despair of Thoracic Outlet Syndrome (cont.)

After much hesitation, I went to see a physical therapist that a friend had recommended. We explained my situation and asked if he could figure out the cause of my symptoms. He examined me and walked in with a book that showed an image of something called thoracic outlet syndrome (TOS). It was the first time that I felt that sense of relief that you get when something finally makes sense. I tried PT for
three months and did not get relief from my symptoms. My physical therapist and I decided that I needed medical assistance with this.

I went to a physiatrist who took a chest x-ray and told me that I had a cervical rib, which is a very common cause of TOS. He gave me valium for the spasms in my shoulder and chest (by my armpit) and recommended that I increase PT to twice a week. I did so for two more months until one day my three fingers went cold doing an exercise that I had done for the past five months without any problem. My physical therapist was at a loss for what to do, so I was back to square one.

Three months later, I went to another physiatrist who came highly recommended. I mentioned TOS, but the doctor did not seem to believe that my symptoms were being caused by that. Instead I was sent back into the dreaded MRI machine to rule out a tumor in my chest. Again, no tumor was found and I was left without an answer.
Meanwhile, my fingers were now going cold without any identifiable trigger. My neck, shoulder, and chest were in constant pain. I went back to my original orthopedic surgeon three months later. Once again, I was told that TOS was a possibility, but unlikely, according to him. I was told that I would have to go to Boston (I live in New York) for an official diagnosis of TOS, but his recommendation was that taking three months off of work would get rid of my symptoms. Work was busier than ever and I didn't believe that it would actually work, so I never took the three months off.

My sense of despair had taken over. It had been over two years since I lifted any weights and over a year since I was able to work out without pain. My daily activities revolved around my pain. Everything was getting worse, and no one seemed to know what to do. I hit my threshold for suffering and went in search of another doctor.

It was exactly three years from my first appointment and I finally found the doctor who promised a diagnosis. This was my third and final physiatrist. It turned out that there was a place in New York where I could have an MRI done to test for TOS. I learned to never say never after my third MRI. I also realized that my fear in the MRI machine was very real and justifiable. I was given valium for the day of the test and taught some deep-breathing techniques that made it more tolerable, not enjoyable. The doctor ordered chest x-rays that ended up showing that I did not have a cervical rib, which had been my one connection to TOS. The MRI was inconclusive. The doctor was still convinced that I had vascular TOS, so he sent me to a vascular surgeon who had performed operations on TOS patients.
I was able to see the surgeon two weeks later. After a full examination, the surgeon determined that it was not vascular TOS but could possibly be neurogenic TOS. He wanted an EMG done to rule out a blockage coming from my neck. Once again, my tests were negative. The final decision was mine to make. The surgeon offered to perform a transaxillary rib resection in the hopes of finding something once he went in. This was an invasive surgery that was not going to be without substantial recovery time and possible complications. After so many failed tests, it was hard to be hopeful any longer. My final decision to proceed with the surgery was out of desperation. I felt like my life was being controlled by my pain, and I had to try anything to find relief.